Attack of the Killer Couches, or Why People With HIV and Neuropathy Need to Get Off Our Backsides! Part One

By Dave R.

March 29, 2012

Internet links shown in these posts are designed to provide more detailed information if required.

Nobody with neuropathic pain, or tingling, or numbness wants to hear it. Neither do those people with HIV who are exhausted from the pressures, both physical and psychological, of living with HIV and its medications. These are people who on some days are so tired they can't move one foot in front of another and they just don't want to be told to go forth and exercise. Yet they have to; we must! It's a question of how much longer we want to live.

I've always resisted this sort of fire and brimstone rhetoric; whether it came from the pulpit, or politicians, or medical authorities, or from well meaning friends. Tell me to go one way and I'll go the other and with that sort of bloody-minded stubbornness driving my philosophy on life, it took me until seven years ago to give up smoking. The fact that my lung capacity improved dramatically after that particular lifestyle change certainly made me more open to logical advice but I'd still smoked like a chimney for thirty five years!

All that said I've had to summon up the courage to be arrogant and preach to people about exercise here. Please forgive the bullying tone; it's not my job to tell you what to do with your lives and I am allergic to evangelists of any sort but I do feel it's important to pass the following information on to other people who might be in the same situation.

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Actually, until neuropathy put a stop to several of my physical activities, I never considered that I needed any extra physical training. Then within a couple of years of the symptoms beginning; my stomach ballooned, my muscles began to lose their tone and my fat and cholesterol levels began to rise alarmingly. I became a TOFI (thin on the outside, unhealthy fat on the inside and on the stomach). This was almost certainly thanks to my enforced lifestyle change. I've never been a narcissist but looking objectively in the mirror really shocked me! Many people with HIV will recognise the feeling that their attractiveness and self-worth can evaporate before they know it yet even with that in mind, I still didn't seriously consider doing anything about it. Neuropathic pain, sleepless nights and physical weakness were just too dominant and quickly destroyed any good intentions. I began to accept a sedentary lifestyle as being unavoidable.

My mindset all changed after watching a BBC Horizon programme about the new science of exercise (see link below). Then, for the first time I began to realise what would happen inside my body if I sat in front of the TV for the rest of my life. I confess, I haven't yet done much about it but at least I've realised what I have to do. I suddenly realised that if HIV plus neuropathy doesn't kill me then eventually, inactivity most certainly will.

So what sort of dramatic information provided me with a wake-up call to change my outlook and given my neuropathy problem is there anything I can do about it? First of all, the idea of hours in the gym for someone with neuropathy is pretty much a non-starter. Foot and leg issues; muscle weakness, lack of feeling in some places and pain in others; don't get me started! So when this TV programme backed by new U.S. Canadian and British research began by stating that hours in the gym and running or jogging could be unnecessary, my ears pricked up.

The second premise that all exercise regimes should be tailored to your own situation was even more attractive. The video still virtually excludes most people with neuropathy or other HIV-related problems but the mental barrier caused by the thought of months on end in an expensive gym, with no guarantee of success, is removed. Although we still won't be able to do intensive short bursts, we can see the value of doing something. Anything is so much better than nothing.

The fact that 80% of fit and healthy people don't exercise and spend up to twelve hours of the day in a chair, made scientists want to explore other options based on good science. They looked at how a sedentary lifestyle changes how the body behaves and concluded that traditional views of how to lose weight may be flawed.

Most people think they'll lose weight if they burn off the calories with lots of exercise but very few people like doing the hours of activity required. Furthermore, to burn off the calories after eating a banana, a muffin and a cappuccino, you need to run for 55 minutes! You can imagine the effort needed to burn off a McDonald's diet! In the long term, most people just won't put in the effort and these are people without illnesses to slow them down even further. Some people even 'compensate' for a couple of hours in the gym by eating more; either as a reward, or as a misguided 'energy-replacement'. So finding a shorter 'cure' would encourage more people to exercise in such a way that they will lose weight and increase the health of a nation in the process. People with neuropathy and HIV will still be reading this and muttering that walking to the gym alone would be too much, never mind doing anything when you get there, but bear with me.

When you eat fat-rich foods, the fat goes into the gut and then into the bloodstream. Unless you can keep it moving, or convert it to energy, this causes changes to your metabolism, which in turn cause a build up of fatty deposits on the walls of the blood vessels. It's a no-brainer then, to realise that you need to reduce the levels of fat in your blood.

There are different sorts of fat and it is thought that fat below the waist may not be too harmful and may even be protective in nature. Similarly, subcutaneous fat is not as dangerous as the fat stored around the organs deeper under the skin. This is called visceral fat and when it builds up around the liver and pancreas, you're heading for trouble. On an MRI scan, you'll be able to see this fat as white areas surrounding the organs deep under the skin surface. You may well be a relatively thin person but can still have dangerous levels of visceral fat. These fats are the ones that lead to Type 2 Diabetes, which if you already have neuropathy, you definitely do not want added to the list, as it is a prime cause of neuropathy itself! Diabetes is caused when insulin stops working in your system and insulin normally removes sugar from the blood.

We've got to get rid of visceral fat and that brings us back to exercise and fitness training. Scientists have found that a long walk (brisk is better but any walk will do) before, or directly after a meal, triggers the release of an enzyme which changes how the body processes fat. Nothing new there then; we've always been advised to take a walk after a heavy meal. However, the difference between walking and not walking is substantially less fat in the bloodstream. Exercise causes the fat that's trying to make its way through your blood vessels to be dumped into the muscles, where it's converted to energy, or 'burned off'. The walking also switches on genes that make a protein called lipoprotein lipase and this protein reduces fat deposits in the blood. The catch is that the exercise needs to be strenuous in order to achieve the necessary effect. I know, I agree with neuropathy patients shouting, 'Hello, we're still here!' and I also sympathise with other, fitter people with HIV, who are asking what's actually new here.

A study referenced in the BBC programme was done on the results of a thousand people, exercising four hours a week for twenty weeks. The results were startlingly different for different people. Many people just don't respond to 'normal' fitness centre regimes, which is why so many people just give up after achieving little difference in their shape. Strangely enough, it's just been established that it's also genetic and you may be a responder or a non-responder but hours of exercise won't do anything to change what is predetermined. In the future a simple DNA test will be able to determine whether you'll gain any benefit from consistent strenuous exercise but for now, you need to tailor your exercise to your own condition and the results you achieve. All exercise is good but the results will still be different for different people. This brings us a little closer to the neuropathy patient, who may be one of the most limited regarding exercise potential.

The BBC programme looked at the possibility of doing a few minutes of really intensive exercise a week (speed cycling on a home machine) and found the results to be astonishingly just as good as if you'd spent hours in the gym. It doesn't sound much but it works. Are you now beginning to hope that there may be something you can do?

Apart from trying to stop fat deposits building up in stores in your body, the other major benefit of exercise is of course, for your heart and lungs. They don't really know why but how good your lungs are in getting oxygen into your body is called the VO2 max and it's an important marker for future health. Improving your VO2 level will also improve your insulin sensitivity and enable sugar to be removed from your blood. Aerobic exercise also helps your physical functions, maintain body weight, fight depression and increase pain tolerance. The reward is living longer. What the scientists still don't completely understand is why short bursts of high intensity exercise will change your metabolism so positively. Glycogen stored in the muscle is apparently quickly broken down by intensive exercise and this gives a signal to your bloodstream that it must provide more glucose for energy. This in turn causes more glucose/fat to be sucked out of the blood thus not allowing it to eventually build up dangerously around your organs. It goes right against the fitness industry maxims and is definitely not in its commercial interest, but who's important here!

All this is big news for those (healthy or unhealthy) who sit a lot. We need to increase our NEAT levels. This is Non-Exercise Activity Thermogenesis and means nothing more than increasing the number of calories we can burn off during every-day living but sometimes a catchy acronym can help you remember. Being active switches on the genes that control fat levels and movement of any sort increases your metabolic rate (again the burning of calories). If 80% of people are really not taking regular exercise and have an unhealthy diet, the results are filling up the hospital wards of western societies. As neuropathy sufferers we can't feel in any way smug. The reason for all this information is to alert people with HIV to the fact that, however difficult, inactivity is a terrible option. Your body goes to standby when you sit too long and all sorts of junk builds up in your system.

Okay, all that information probably leaves you feeling somewhat frustrated if your movement is already limited by pain and disability. So what can we do for ourselves? Read Part Two of this article to find out.

This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.

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English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

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